Tuesday, April 29, 2014

Guest Blogger- Beth

We have another CF mommy-to-be to introduce today! Beth is from the blog, The Overdeeps, where she chronicles her pregnancy journey. She discussed everything from dealing with CFRD while pregnant to nursery preparations. She has tons of cute pictures too!Everyone that has CF seems to
have a very different experience. Share a little about your CF story or how CF
affects you.

I was diagnosed when I was 4,
after my sister and I had been sick for years. She was 6 at the time of our
diagnoses. My lungs were in pretty decent shape but I suffered greatly from
being pancreatic insufficient.

I managed to stay relatively
healthy and avoid the hospital until high school. I started culturing MRSA when
I was 18 and saw my health really take a hit. It took moving to a new state
& clinic to really gain motivation to kick my sick butt into gear and I
managed to get my health back up.

I continued to improve, especially
since starting Kalydeco. I'm now the healthiest I've been since I can remember
(we're talking numbers I haven't seen since probably I was 10 or 12) which is a
good thing, since I'm pregnant!

Deciding to have a child when you have CF is a very difficult decision. Please
share how you came to the decision to try to conceive.
I've always wanted children. From a small age I was always enthralled with
babies. I started babysitting and nannying in high school, and I ran a few
children programs out of the public library. I was just good at taking care of
children, it was very natural for me. Having children of my own was not really
an option in my mind; it was going to happen.

I met my husband in high school-- we started dating our freshman and sophomore
years, but I dumped him a few times along the way and we ultimately got back
together once we headed off to college. He was and is, my best friend. He
always knew my strong desires to have a baby - but he is a very logical,
sensible person and always reigned my "I want it now" madness in.

We had to compromise on our timelines. He wanted to graduate, get a PhD and
work for a few years before having children -- with his timeline we were
looking at early 30's. My timeline was "As soon as you graduate undergrad,
knock me up!" Early twenties. Needless to say we both agreed that waiting
so long was much riskier, but we needed to be very comfortable in a few areas
before getting 'knocked up.'

We decided that once he had graduated undergrad and had a better idea of what
our future held, we would talk about trying for babies. He ended up getting
into a PHD program and I had our years mapped out to a T. That of course, never
happens the way you plan, so my 1 year and then a baby plan turned into a 2.5
year plan. I worked as a nanny in the new city for 2 years and we saved every
penny I earned. I concentrated on getting my health up, and with the help of
Kalydeco I started seeing numbers I hadn't seen in over a decade. Things were
looking good! In the end our decision to have children came down to a few major
factors:

Would we be settled
for the next couple of years in one spot? (Passing a PhD qualifying exam was
the dealbreaker for this question. He passed, so we knew we would be in one
spot for at least 3 more years).

Did we have enough
comfortably saved up to live off of for 3+ years while we cut our income from
two down to one and upped our household from 2 to 3. -By saving my entire
salary for 2 years, and being good savers from the start of our relationship,
we felt we had a comfortable savings cushion to answer yes.

Was my health in
stable condition? I had gone the longest without needing IV's since we moved
and since starting Kalydeco. I went 18 months. I was averaging 6-9 months
previously. We decided that yes, with my lung function as high, my weight was
stable and I was the strongest physically that I had been in years we thought
my health was spot on to support a pregnancy. The doctors I see at clinic were
fully supportive and had no concerns about my falling pregnant and carrying a
pregnancy to term.

This led us to getting pregnant at 24, and we'll be parents at 25.
Mid-twenties: compromise!

Trying to conceive can
be a difficult journey for some CF women. How was your TTC journey?

Our trying to conceive journey involved me being absolutely crazy. I started
preparing WAY before we threw the condoms away. We're talking years of prep. I
focused on getting my lungs healthy, my weight up and putting on muscle mass.

Once we knew we could answer yes to all 3 major factors of having a baby, I
started charting my cycle. I did temperature charts noting my cervical mucus
and body signs. I was able to track my ovulation within a few days, give or
take. The month we decided to go ahead and throw away the condoms I added even
more craziness! I took Mucinex to help thin out my cervical mucus, I drank more
water to also aid in the thinning of mucus (and just because it's better for
you!). I bought some ovulation prediction kits and a bunch of pregnancy tests.
I was in it for the long haul!

We had sex every other day after my period ended, and every day the week around
ovulation. I ended up feeling sick shortly there after so we stopped having
sex. We figured we maxed out our chances and I was certainly not in the mood.

I got all the signs of a lung infection (and hadn't had IV's in almost a year)
so I scheduled a tune-up because I knew I couldn't wait. I was in the two week
waiting period when you're not sure if you're pregnant or not.

I figured a tune-up now would be good if I was pregnant since I wasn't yet
sharing a blood supply and baby wouldn't have hunkered into my uterus yet. Or,
if we weren't pregnant I'd be in tip top shape for next month of trying!

I was giving a pregnancy test the first day I was there, only to have it be
negative. We treated my infection as if I wasn't pregnant and decided if my period
was late we'd retest and reevaluate based on those findings. Lo and behold my
period due date came and went and my charting temperature still hadn't dropped.
I demanded a blood test (they also did a urine test) and it came back positive!

After one cycle of TTC we were successful. To say my husband and I were
surprised is an understatement. We both were mentally prepared for MONTHS of
trying, and here we were a mere 3 weeks later... pregnant.

To summarize, I had quite the easy experience getting pregnant and I can't
begin to tell you how thankful we are that it worked out the way it did. We
contribute a lot of the ease with Kalydeco since it helped regulate my cycles
and thin out my regular cervical mucus. My husband however, likes to brag that
he's just got good swimmers. ;-)

I think being at peak health- for both of us, and at an age where you're
naturally more fertile really helped tip the scales in our favor.

What were some of your
biggest fears regarding pregnancy itself? So far have those fears been
warranted? / What are some of the biggest challenges of pregnancy for you so
far?

Some of my biggest fears for the pregnancy had to be my health issue. Was I
going to get morning sickness and lose all the weight I had put on? Was my CFRD
going to be crazy and get so complicated? Was I going to need IV's frequently,
are there any IV's I can have? Can I stay on Kalydeco? What if my health drops
drastically and I miscarry? Etc. ETc.

I think being pregnant for the first time you naturally have a lot of fears and
concerns. I mean, come on they tell you not to eat deli meat and sleep on your
back! And all sorts of crazy things!! Now add ontop of that the fact that you
take 15 different medications to control your CF and you have an issue with
diabetes already... The fears were plentiful.

I think excitement really took over and helped me through the first trimester.
I had stopped working, which was great, because my biggest symptom was exhaustion.
I slept almost all day and all night. I lost some weight since I had no energy
to exercise, my muscle mass that I had worked so hard to pack on was slowly
decreasing.

I also was newly pregnant in the start of the flu season! Talk about paranoia!
I hardly left the house, and one fateful day, when I ventured out, I brought
home the flu (even after getting my flu vaccine).

The flu really did me in. Luckily I was out of the first trimester at that
point, so a lot of the drugs that aren't safe were usable. The flu festered
into a lung infection and I've been sick ever since. I've had another round of
IV's and just having come off them 2 weeks ago I'm starting to come down with
another infection.

I think overall it's been easier than I anticipated, but in some ways harder. I
wasn't prepared for something like catching the flu -- it could have happened
to anyone-- and then having that turn into this long drawn out battle of
infection. My blood sugars have been a bit of struggle to figure out and tame,
but so far so good. I think the hardest part so far has been mentally. I'm
mentally exhausted by over analyzing and worrying. "I haven't gained
enough weight, maybe if I had done extra airway clearance I wouldn't be sick
right now, I'm not eating enough, I'm not exercising enough, what if all my
coughing causes early contractions, how am I going to handle a newborn when I'm
SO SICK?!"

Having a great husband has been my saving grace. He talks me down, reassures
me, and gives me countless backrubs.

So while my second trimester has had a lot of bumps along the way and may be
harder than I anticipated, my first trimester was SO easy that I think we're
averaging out to be about what we expected or even easier than expected.

I'm currently only 2/3 of the way done baking my baby, so you may have to check
back with me once I've finished the journey!

How do you feel your
pregnancy is different than a non-CF pregnancy?

I think my pregnancy is
different than a normal pregnancy (thanks to CF) for the following reasons:

Catching the flu turns into a massive infection!

Being exhausted in
the first trimester was much more damaging than I would anticipate a normal
pregnancy just because we already use more energy just doing simple tasks, add
in not exercising and it really affects your lungs and muscle tone which
overall affects your general health.

Diabetes is strange.
I'm not following any sort of pattern; not CFRD not GD, just strangeness. My OB
nutritionist and CF nutritionist work as a team so they've been amazing!

APPOINTMENTS! My
schedule is crazy filled with appointments.

This last one may be
controversial, but I feel very judged. I feel since falling pregnant (and now
looking pregnant) I've been judged. By hospital staff to complete strangers, to
even family. I think that was something unexpected and has been hard for me.
I'm not sure how a normal pregnant woman would feel - I'm sure we all feel
judged at one point "Why yes she did just order a regular coffee and she's
pregnant! GASP" but I think having CF really amplifies those feelings for
me.

What are your doctors
doing to ensure a safe and healthy pregnancy?

My doctors are great. I see a high risk OB practice (who are SO much more
relaxed than a regular OB) and I see my CF team regularly. In the first
trimester since I wasn't having any problems I saw everyone at normal
intervals.

Since catching the flu and then harboring a lung infection, I've seen everyone
much more frequently. I'd say my CF team has been way more valuable than my OB
team. In fact, I tend to call them first to see if it warrants a call to the
OB. My clinic is pretty large (around 400-500 adults) so the fact that I feel
like I get extremely personal care, even more so now that I'm pregnant is so
reassuring. Now, if only they could deliver my baby too! haha

Overall, not many of my meds were stopped. I stopped a few things for the first
trimester: pulmozyme, advair, flonase. We stopped an alternating month of TOBI,
but continued all my other meds. Their philosophy is 'healthy mom, healthy
baby.' So far it's been working well, baby is looking great and is right on
track!

As I progress to the third trimester I'll see my OB clinic every 2 weeks, then
every week, along with more frequent growth scans for baby. I'll see my CF team
once a month and then every 2 weeks in the final two months. OR, if things get
a little haywire I'll be seeing them as frequently as needed.

What are some of your
concerns about mothering with CF?
Oh man, where to start! Concerns about mothering with CF. Being a nanny for so
long (and working with plenty of newborns and infants) I know what's coming.
Only this time, I won't be able to hand baby back and say
"goodnight!" and go home to a baby free house. My main concern is
sleep! As a CFer my mood and health truly depend on getting enough sleep.
Infants and sleep don't really mix, so I'm most concerned with that.

On a larger, much longer timeline/scale I'm worried about how we'll handle
hospital stays and getting sick. I'm nervous about taking care of someone other
than myself on top of taking care of myself.... all the time! Our nearest
family member is about 2 hours away and then the rest of our family lives about
7 hours away.

I'm nervous about not being able to provide adequate attention when I'm getting
sick, and I'm afraid I'll be getting sick more frequently. And is it just me,
or do we all get snappy and crabby when we're not feeling well? The thought of
being snappy to my little girl is terrifying and something that constantly
worries me.

Even though we did an amplified CF screening on my husband I'm terrified that
our daughter will have CF. I'm not sure I could mentally deal with the fact
that we were responsible for putting someone through a life that I wouldn't
wish on my worst enemy- never mind our own child!

I have plenty more
concerns but those seem to be the biggest ones so far for me: lack of sleep,
running myself down, caring for someone while sick, and having a child with CF.

If you could give advice
to a CF women TTC, what would it be?
My advice would be to plan, and talk! It's so key to be as prepared as you can,
but also flexible in the fact that things don't always go to plan. I think
talking is also very very important. Talking to your partner, your parents,
your support system, your doctors... talk, talk, talk! The more information you
have the less scary it seems. Good luck ladies (and men) it can be a daunting
journey, but I'm sure the end result is so worth it. =) Beth gave birth to a healthy baby girl on June 18th weighing in at 6lbs 5 Oz.

1 comment:

Thank you so much for your interview, Beth! I think your fears are shared by all CF mothers-to-be, but I also know that CF women and children of CFers are strong and resilient and somehow we make things work. Your baby is lucky to have such a wonderful mama.